Welcome to CHD Babies!

My only hope with creating this blog is to help families of a loved one affected by a Congenital Heart Defect (CHD). I am blessed to have an amazing CHD Baby (Chloe) who has inspired me to help make a difference! This blog is one of MANY wonderful resources out there, raising awareness and fighting for all of our CHD Babies!

Below is a short video with CHD Statistics and a recap of Chloe's first year.

Since 2009, I've been advocating for mandatory Pulse Oximetry Screening of all babies born in Missouri. Visit my Pulse Oximetry page to see why this fast, easy and painless screening saves lives.

2013 is the beginning of my new journey - racing for CHD. My goal is to swim, bike or run my way to the finish line as much as possible this year, while raising CHD Awareness at the same time. For more details, check out the latest & greatest!

To have a photo of a CHD Baby, Adult or Angel added to my Heart Babies page, please email me your name, birthdate or angel date, CHD type and photo.

As a heart mommy, I know what many other heart families are going through. Please feel free to email me or post comments on the blog with any questions, thoughts or feelings you may have.

Would love to hear from you! Thank you to everyone for your support!

 

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15 comments:

  1. NoelSeptember 9, 2009 at 6:03 AM

    I am glad that you set this blog up. I have been blogging for 3 years now and have connected with other parents that have children with the same syndrome as my child and the same heart issues. My blog is http://claytonkids.blogspot.com/ . Abi is now 6 years old!
    Noel Clayton

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  2. likeschocolateSeptember 14, 2009 at 7:12 PM

    I guess my post never made it on here. Was wondering if I could post your site on mine. I have a 2 1/2 year old with TOF. He is doing great despite needing a PVR later on. Keep up the good work. Your article in the Kansas paper made me think of what it was like when we found out about Roman only diff was we found out at 19 week ultrasound.

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  3. CharityVLSeptember 25, 2009 at 9:25 AM

    Just found you through Twitter. My heart baby's name is Chloe too, but she's 9 years old! She's going to be having her second surgery very soon, so I am always looking for other CHD parents, because they understand. I look forward to seeing more from you here. Thanks.

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  4. The Mason FamilySeptember 30, 2009 at 10:07 PM

    LOVE the blog!!! I look forward to reading more...

    Your sweet Chloe is such a doll!

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  5. TaraOctober 11, 2009 at 5:04 PM

    I too love your blog. I found it by following other heart moms. My son has HLHS, transposition of the great arteries,left AV valve atresia and ventricular inversion. He has 2 open heart surgeries so far and is doing great! Keep up the good work!

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  6. RHONDAOctober 13, 2009 at 8:37 PM

    I love your blog!! Thank you so much!! Your Chloe is just beautiful!!!

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  7. AnonymousOctober 18, 2009 at 7:08 PM

    I've found you through Aiden Beers - have become pretty good friends with Levi during their journey. Not sure if we have ever met via babycenter.com, but they have a great heart board there too. Thanks for all your wonderful work with this blog. Our daughter Eve was born not long after your Chloe - Dec 12, 2008. You can see some of her journey on my husband's blog: tweetandmeet.com. I have been working for several months now on a pilot program here in MN to get pulse oximetry on the newborn screening roster. Our kick off with the Dept of Health and the U of Minnesota Children's hospital is this Friday. We have a valuable friend on newborn screening in Dr. Rinaldo at Mayo. He can make this happen on a national level (as long as the data continues to support it). If you'd like to get in touch directly, email me at annamarie@a-s-i.com or 612.964.6728. I'd love to share ideas and contacts. I'm also flying to DC next week to attend an FDA workshop on pediatric heart devices. Something also long overdue. Looking forward to meeting you! Chloe is gorgeous, BTW.

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  8. StephanieOctober 22, 2009 at 2:36 PM

    Hi, I just saw you as a follower on my blog.I'm following you too, we had the same amount of followers... funny. Now you have one more!
    Your Chloe is beautiful.

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  9. Bill and MaryOctober 27, 2009 at 5:02 PM

    Because your blog has always been so inspirational to me, I have an award for you over on mine!

    http://browniebitez.blogspot.com

    ~Mary :)

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  10. grammieNovember 15, 2009 at 7:44 AM

    We are also trying to raise awareness. elijahslegacy.blogspot.com and http://www.elijahslegacy.ning.com
    The second is a website we are building to raise awareness and support. Please join us and share your story.
    God Bless,
    Michelle

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  11. mybizzyworldJanuary 7, 2010 at 7:28 PM

    Wow Kelly,
    I love what you are doing here. I have a ning group that tells about chds, and co moderate a yahoo group of the same name....chd babies. I hope we can collaberate, in fact I am going to encourage people to look to your blog for info...I hope that is ok. you can always reach me on yahoo or twitter. I'm following you on twitter. I will submit abbys pic too. Excellent work. I have a heart blog also, but I don't blog on it too much. I am too busy reading all the other wonderful blogs out there. Trying to soak in as much knowledge as I can.

    carole

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  12. shashankFebruary 15, 2010 at 10:34 AM

    Here is a link to more information about the genetics of Noonan Syndrome that was prepared by our genetic counselor and which has links to some useful resource for those dealing with this condition: http://www.accessdna.com/condition/Noonan_Syndrome/271. There is also a number listed for anyone who wants to speak to a genetic counselor by phone. I hope it helps. Thanks, AccessDNA

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  13. KellyMarch 14, 2010 at 10:32 AM

    Hello. I came across your blog today - your daughter is beautiful.

    We have 4 girls - 3 are here with us and 1 is in Heaven. Our precious daughter Liberty is our second born daughter - she is the one who passed away. She was 5 months old when she died, a day before my 25th birthday. She had a very rare genetic condition that the dr.'s new nothing about. She fought long and hard, but is now waiting in Heaven for us. Just 9 months after she passed away we had our 3rd daughter. We found out when I was 27 weeks pregnant with her that she had a CHD called SVT. She is now 19 months old and doing well. We have had our ups and downs with her heart/health - but thankfully she is doing well with medication. I look forward to looking through your blog some more. God bless you for your efforts to reach out to other families!!

    Hugs,
    Kelly

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  14. ThereseApril 11, 2010 at 2:21 PM

    I am a 33 year old who has undergone 5 open heart surgeries. I have left single ventricle, TGA, hypo plastic bicuspid and tricuspid valves, ASD and other little things (CHD). You parents are very strong and loving, I admire that. God truly Blesses us CHDers and their parents. We love you for being there for us even when we may not show/say it. THANK YOU AND WE LOVE YOU!
    Thank you,
    Therese

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  15. trying to figure it out...August 12, 2010 at 11:19 AM

    Wow, what an incredible story you have to tell. I have watched my father's pediatric patients and their families over the years and all are truly inspiring. We now have good news for pectus carinatum patients! A great brace with amazing results, an easy alternative to very expensive surgery. The Dynamic Compressor, created by Dr. Marcello Matinez Ferro & sold in the US by Devices-In-Me, founded & directed by Dr. Michael Harrison. It uses a pressure sensing device to create an accurate adjustment schedule to determine how long & at what pressure the brace must be worn. Check out pediatrideviceconsortium.org to learn more or email me at kelceyharrison@gmail.com

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I heart CHD Babies!

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